big decisions

December 1, 2014 at 2:52 am (Uncategorized) (, , , , , , , )

before getting to the big decisions that we are trying to make i want to take this time to tell you how special this thanksgiving was for me.  it was difficult to have the conversation and tell him that i had stopped taking my medication.  you’ve been there i’m sure, there’s this very important issue to talk about and you want to wait for the perfect time.  in truth there is no perfect time for some conversations.  how to say i want to do this so i can be a better partner and not have him feel guilty.  i had just reached a point where i felt my life was not my life.  to explain that this is about quality of life to the person who loves you and wants you to be here as long as possible is difficult to say the least.

for a few weeks before thanksgiving i decided to try cutting back on my meds to see if it would make a difference.  cutting back did not seem to make enough of a change, i was still sleeping for 12 hours then taking a nap after being awake for a couple of hours.  it was a struggle to stay awake or engage for more than a couple of hours at a time.  the upside of that is when i am sleeping i am not in pain.  the level of pain i experience on a daily basis is not something i talk about in general.  one reason is because i don’t think my pain is worse than anyone else’s.  the other reason would be i just don’t think talking about it is productive.  so the down side of not taking my medication would be that i may be losing time from my future.

now that we are back i will be back on my meds for now.  a week before my sister comes for her visit and we go to charleston for christmas.  what happens after that i can’t really say for sure.  no one really knows what lies ahead do they? oh, some things we know are going to happen. people will live and people will die. unless there is some disaster the sun will rise and set each day.  the question is how you spend those hours each day and what is living to us as an individual?

there is not one day that i take for granted.  each is a precious gift we are given.  there is a pull to be comfortable even if that means sleeping most of the day.  there is an equal or greater pull to be alert and spending as much time as possible with my love, family and friends.  tonight we had a brief conversation about the defib and the question of turning it off.  so far we have just left it on and will have to face this decision along with other’s for now.  it’s one of those decisions that you hope to get right.  if we turn it off too soon i may leave before i am meant to, if we leave it on too long then i will not go gently in to that good night.

this is where i leave you tonight.  i welcome any advice or information you think i should consider.  this thanksgiving could be the last one and i don’t regret my decision to stop the meds so i was able to have quality time with my loved ones.  let’s hope it was the best decision medically. it was psychologically and emotionally.

19 Comments

  1. prenin said,

    Whatever your decision hun, I know it will be the right one for you.

    You and Chris are lovely people and you have a bond stronger than you realise! 🙂

    Take care of yourself sweetheart and God Bless You both always! 🙂

    Love and huge hugs!

    Prenin.

    • s blake callahan said,

      fortunately i am very aware of just how lucky chris and i are to have found each other. too few are blessed with this kind of relationship. in a perfect world you would find the same kind of love.

      for now you blessed with family and friends who love you and support you:) you have a whole community of online, blogger friends who care deeply for you and your well being.

      sending you big warm hugs and smooches:)

  2. maggiebea said,

    I’m so touched by your candor in the way you approach these decisions. It seems to me that psychological, emotional, medical all have to be considered, but one or other is likely to take precedence at different times. It’s heartening to me to see you so much in control of how you make your choices, deciding to spend some time sleeping and pain-free and other hours alert to spend with those you want to spend time with.

    In other spaces (both internet and what is loosely called ‘real’ life) some of us are talking about the difficulty medical folks have in understanding the real needs and desires of their patients. Thanks SO much for adding to the conversation for me.

    Wishing you plenty of gentleness, tenderness, and love in all the time that remains.

    • s blake callahan said,

      thank you so much for your support, it does help. as for candor i feel the only way for me to move forward is with as much honesty as possible. in my experience the physical is important yet not the first priority for me. quality of life is so much more than physical comfort. i have watched patients give up to much to doctors who knew too little. even with my friends and family i encourage them to take control of their own lives and not let others decide for them.

      her death did spark but not light a fire and that makes me terribly sad. there is a group called the “conversation project” and they are trying to get people to talk about what they want or don’t want in the event of a health emergency. too many people just don’t want to think much less talk about their impending death. there are so many reasons not to think about it until it is too late.

      knowing that people like you care makes a difference for me. i know that you work in the field, sort of boots on the ground and if i can add to the conversation i count myself blessed.

  3. jmgoyder said,

    You are so amazingly wise, Sandra!

    • s blake callahan said,

      maybe we all get wiser when we are facing such uncharted waters. you certainly have, haven’t you?

  4. Syl said,

    I support any decision you make. You are an amazing person! Of course we all want you to be here as long as possible. But, I also believe you should be here on your terms. I hope I can be as strong as you when it comes to making these types of decisions. Goddess bless you, sending you huge hugs, Syl

    • s blake callahan said,

      oh syl it is so nice to hear from you! i appreciate your support my friend, we never know if we are making the right decision. we only make the best decision we can given who we are and what we have learned in life. your goddess has blessed me many times in my 60 yrs:) you already are that strong and i have no doubt you will be that way whenever you need to be.

      sending warm hugs and affection

  5. Judy said,

    Dearest Sandra, I wish more than anything that you will not suffer when the time comes. No one deserves that and I pray it will be a peaceful fade into the night. As you treasure every moment, know that you are leaving behind a legacy of inspiration to everyone reading your words. I will never forget you. I admire your honesty about making these heart wrenching decisions. I can’t imagine anyone being more thoughtful and loving about this than you. Everyone knows that, including Chris. 🙂

    • s blake callahan said,

      i don’t think i will suffer in the way most of us think of, my tolerance for pain seems to be holding. it is the suffering of my family and friends that concerns me most. to leave is much easier than being left. it certainly is much easier to face the uncertain path with the love of family and friends. i feel blessed to have met you judy and think of you often.

      • Judy said,

        Yes, there is no way around the fact that your absence will leave a huge void for many people, especially Chris. Death is such a mystery that we all will know one day – I can only hope you will both be together for eternity when his time comes. For me, love never dies. You will live on in ways that you cannot imagine. Thank you for thinking of me! I’m feeling much better and treasure my life. I’m thankful for having you here appreciating what I do and sharing in my beautiful journey. It has been a great gift in my life. 🙂

      • s blake callahan said,

        i will keep it short tonight but no less from the heart. you are so right to say there is no way around the fact that chris is going to feel a void when i am gone. it is a comfort to know that he has so many that love him and will be here for him during this difficult time.

        of course i think of you and what you go through each day. that is what a friend does and i consider us friends.

        wishing you peace of heart and a wonderful christmas

  6. Terry said,

    If I were in this situation, and I believed truly in my heart that this may be the last holiday shared with loved ones; I would probably suffer through the pain in order to enjoy being awake and having those wonderful memories. Only you know the depth of your pain without the medications, so this is a big decision. For me to give this advice, I am not in a position to be able to truly understand your pain, but on the surface, this would seem the route I would take. Love you and hugs. One thing to keep in mind dear friend, is the constant and intelligent decisions you have made prior to this one. Take heart and trust your decisions. This is the best I can offer you. Hugs

  7. Angie, also known as YS :) said,

    Well I get the quality of life issue. Who wants to live just to sleep all the time? I feel strongly about not turning the defib off. I really do think you’ll go drastically down hill from there and besides, going quietly in the night sounds boring (not like you at all!)
    Love you.

    • s blake callahan said,

      as we discussed i am not having the defib turned off anytime soon. as far as the meds i am learning how to adjust them for more waking hours and a bit of energy. can’t wait to see you in a couple of weeks.

  8. appletonavenue said,

    Your heartache is so vivid in your blogs. I cannot even fathom the decisions you are faced with. I can only send you wishes for pain-free days, and more time with your family.

    • s blake callahan said,

      thank you for your wishes and so far they have been a big help to me. i think of the support i have and think how lucky i am. it gives me strength to know that others care and take the time to send me their well wishes. it has been a big decision and some times chris worries about this choice. he doesn’t want this choice to take time away from my time of life. i understand his concerns but for me the time with my family during these months is of the utmost importance for me.

  9. Al said,

    Your philosophical questions concerning life and death always leave me thinking about issues that I don’t want to address, but I must. First, let me say that meeting your psychological and emotional needs were more important than the medical since not taking your meds may not have any effect on your time, but does have an immediate effect on your enjoyment of life.
    A comment on the sun rising. At times when I’m watching the ocean in the morning, when the conditions are right, it causes me to think about the eons of time that it has been beating against the shore before I was born and the eons it will continue after I’m gone. It puts in perspective for me the brevity of my time on this planet.
    As for the defibrillator, I believe you will know when to shut it off, as I believe I will know when to call hospice for Alice. At least, that’s what I believe today, subject to change daily.

    • s blake callahan said,

      somehow i missed this comment and have been searching for weeks. finally here it is and i am so sorry for the delay in answering. please forgive me.

      i completely agree that psychological needs have to come first for me. in others i have noticed the opposite but that is just human nature.

      no, none of us want to ask the hard questions but it is completely freeing once you do. i know, i have taken that leap and so glad i did. now it is your turn. are you ready? if not thats ok, wait, but not too long. these things have a way of getting out of our hands if we don’t face sooner than later.

      my grandmother used to talk to me about the piece of sand and that we are much like that sand. just one small piece of something so much bigger. the beach will remain without that piece of sand. i have always love the ocean and wish we were closer to it. i do love the mountains though so i am happy really wherever i am as long as i am with chris. he is my home and always will be just as you are alice’s.

      as for the defib, i am making a dr appt for the next week or two to discuss how and when it can be done. i have my reasons as i am sure you know. i hope that while you are caring for alice and your son that you are caring for you. remember, put your oxygen mask on first and then help others.

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